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On this day in medical history: Ryan White succumbs to AIDS-related pneumonia

Liz Meszaros, MDLinx | April 05, 2018

On April 8, 1990, Ryan White died of AIDS-related pneumonia in Indianapolis, IN. Diagnosed with HIV/AIDS on December 17, 1984, Ryan was one of the first children to contract AIDS, as well as one of the first hemophiliacs to do so. He was infected with HIV after a blood transfusion at a time when important safety measures were not yet in place to protect against HIV/AIDS.

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Ryan was given 6 months to live. His attempts to return to school when he was well enough were met with AIDS-related discrimination and fear. The ensuing battle to get him back into school waged by Ryan and his mother, Jeanne White-Winder, gained national attention, and Ryan became the face of public education about AIDS.

At the time, public knowledge about AIDS was very limited. It was thought of as a “gay white disease” and Ryan faced constant discrimination and negativity as a result of this ignorance. According to Ryan’s mother, he was confronted by people who said that he was gay, and that contracting AIDS was God’s punishment for something he had done.

“I was labeled a troublemaker, my mom an unfit mother, and I was not welcome anywhere,” said Ryan. “Because of the lack of education on AIDS, discrimination, fear, panic, and lies surrounded me.”

Ryan and his family moved to Cicero, IN, where they were welcomed by the community. Various students had taken responsibility to educate their fellow students, as well as parents, about HIV/AIDS, and their efforts led to Ryan being accepted.

Finally, he could be like normal teens, and went to proms and dances, and even got a job at a skateboard shop. According to his mother, this normalcy was exactly what Ryan was striving for, despite his illness.

Ryan lived 5 years longer than doctors had predicted, and died 1 month before his high school graduation and just months before Congress passed legislation bearing his name: The Ryan White Comprehensive AIDS Resources Emergency (CARE) Act. The CARE Act represents the government’s effort to improve the quality and availability of care for medically underserved individuals and family affected by HIV/AIDS.

Since then, this legislation was reauthorized five times (1996, 2000, 2006, 2009, and 2013), and is now called the Ryan White HIV/AIDS Program.

National Youth HIV & AIDS Awareness Day

On the heels of the anniversary of Ryan White’s death, National Youth HIV & AIDS Awareness Day will be celebrated this year on April 10. This day was earmarked to highlight the impact of HIV/AIDS on young people, as well as the need for continued HIV research, education, and resources.

In 2015, children and young adults aged 13 to 24 years old accounted for over 1 in 5 new diagnoses of HIV, according to the Centers for Disease Control and Prevention (CDC). By December 2013, an estimated 60,900 youths were living with HIV in the United States, of whom 51% had undiagnosed HIV, the highest rate of undiagnosed HIV in any age group.

Unfortunately, young people with HIV are the least likely of any age group to be linked to care or have a suppressed viral load.

Through funding, the CDC has engaged leaders in school-based HIV, STD, and pregnancy prevention. The resulting network of educational agencies reaches almost 2 million students and selects and implements effective health education curricula, contributes to school- and community-based health services, and works to establish safe environments to give students a feeling of connectedness to school and supportive adults.

The CDC encourages parents, schools, community- and school-based organizations, and health-care providers to work to create safe, nurturing environments for youth that have a positive impact on their health.

See below for a useful list of resources available to help make National Youth HIV & AIDS Awareness Day a success:

Fact sheets:

References

“Who was Ryan White?” Health Resources & Services Administration. HRSA Ryan With & Global HIV/AIDS Programs. https://hab.hrsa.gov/about-ryan-white-hivaids-program/who-was-ryan-white. Accessed April 4, 2018.

“Ryan White: His story.” Ryan White Official Site. http://ryanwhite.com/Ryans_Story.html. Accessed April 4, 2018.

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